Our first Rare Disease Week in DC


At the 2016 MLD Family Conference a conversation with Dean led to a decision to attend the Rare Disease week.
It was a first visit for wife Nancy and I to Rare Disease week and a pleasure for us to assist daughter Michelle in attending this year.

Last year she had planned to attend but her daughter Emily had been admitted to Boston Children’s Hospital so Kim Brown had to pave the way and the great job she did encouraged us . Having visited DC all the way back to 1968 and many times since, I can conclude that big government is definitely in vogue.
Our first challenge was finding the right hotel and transportation and as always Dean came to the rescue. We stayed in Arlington Hilton Garden Inn based on one caveat, they gave us a reservation that could be cancelled at the last minute, no charge. Michelle was a suspect attendee based on her stroke and cancer recovery status but she was able to recover sufficient to make the trip. We used the metro to transfer from the hotel to meetings and soon were comfortable with travel inside the beltway. My recommendation would be to use Uber (what a great innovation in free and fair trade) to avoid any walking and searching for buildings in the rain.

We attended the RDLA Legislative Conference on Tuesday, which was a series of presentations related to rare disease issues apart from one political speech in support of the ACA which is an oxymoron. Most of the presentation related to current issues of interest to the advocacy community. The room was packed with attendees and the presentations were helpful in preparing us for the next day.

We met and heard some people from NC who had significant experience in advocacy and the group that we participated in helped navigate us through the halls of the senate and congress during our representative visits on Wednesday. We were prepared that we would not get to visit face to face with our representatives and that senior staffers were equally important.

I did see a number of senators in the basement as they departed the subway to the capitol building including Elizabeth Warren who smiled at Michelle as she was being pushed by me but had an MA Rare Disease badge on. My disappointment at not seeing any senator or congressman in our office visits was more than countered by the magnificent scene on Tuesday’s TV appearance of Megan Crowley* in POTUS’ message to a joint session of Congress and the first time ever Presidential recognition of Rare Disease Day!

In summary, it was a great experience and one we will repeat again next year, Lord willing. For many years I have lamented my lack of involvement in the MLD lobby. Dean and Teryn have carried the baton alone too long. This year was a manifold increase from Kim Brown’s sole visit last year. I hope that next year we will have an MLD hotel block rate to encourage participation.

Maybe Trump will attend 😊

 

Farewell, Adios, Ciao, Au Revoir, Sayonara and Zàijiàn,

Tony Hodgson for Michelle Hodgson Pierce and Nancy Hodgson

* Megan Crowley, her father John and the rest of her family were featured in the 2010 film, Extraordinary Measures.

Rare Disease Week in DC … a parent’s perspective

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For those of you who know me, I have been a teaching computer skills to middle school kids for 17 years!.  While I love school now as a teacher, I did not enjoy all aspects of school as a student.  My favorite classes were Science and Gym!  Social Studies, not so much!  Shhhhh….. I really had no interest in our government.  Politics…….yuck!!!!!

So you can imagine my terror when Michelle Pierce, one of my best friends and another MLD Mom, sent me an email inviting me to join her on a trip to DC for Rare Disease Week.    Buzzwords like:  “Legislative Conference” & “Day on the Hill” were making me wish I would have paid more attention in Social Studies class!  However, knowing that we would have a blast together as we always do and knowing we could help our MLD Family was an honor I was not going to pass up.

On the Sunday before I departed for DC, I got a very unfortunate phone call from Michelle saying that Emily had a fever and was not feeling well.  Monday poor Emily was feeling worse and was admitted in the hospital.  You all know as MLD parents, sometimes our little ones have a different agenda.  (Please say a prayer for Michelle, Emily and their family as of today they are still in the hospital.  http://www.caringbridge.org/visit/emilypierce )

Now it turned out that I was headed to DC sans-Michelle. . I arrived late Monday night, met with Dean for a bite to eat and to discuss the agenda for the next two days.

Kim Brown - RDW-DC 2016

Kim Brown & Dean Suhr sporting matching MLD butterfly jewelry – on Capitol Hill in Washington DC 2016 for Rare Disease Week.

Tuesday was our “learning” day.  We attended the Legislative Conference from 8:30am – 5:30pm.  The day started out with an AMAZING breakfast followed by the Welcome which was conducted by our very own Dean Suhr!  (Dean, you did a great job by the way 🙂 …. we need to get you a bell for the next MLD Family Conference 😉 )

 

The rest of the morning there were discussions on the upcoming election, appropriation process, and information on the FDA, PDUFA, and NIH (a lot of acronyms).

Before we broke for lunch we discussed the OPEN Act Accelerating Cures and Treatments, the Rare Disease Caucus, Patient Focused Impact Assessment Act, and the Rare Disease Fund Act of 2015.  These were the very things we were going to “Ask” for in our meetings on Capitol Hill the following day.

After lunch we discussed strategies on how to attend meetings.  Topics discussed were: How to build relationships with members of Congress, sharing our advocate stories, congressional scorecards, hill asks and leave behinds.

They put on a very entertaining and informative skit on what to not do and what to do at our Congressional meetings followed by breakout sessions.

New Jersey The final step of the conference was to break out into our groups that would be visiting senators and congressman from our state.  It was amazing getting to know the group of advocates from NJ.

Some advocates were parents like me, some were grandparents, there was a mother and daughter and some amazing people who had rare diseases themselves.

The next day was the “march on the hill”.  We had an agenda to meet with Senators and Congressmen from NJ.  Mostly we met with their office staff.  Never underestimate the staff personnel.  They are the right hand men and women of your senators and congressman.  They hear advocate’s stories and direct connections to the things we are trying to pass on the hill and report back to them with a “this is a worthy cause, let’s endorse” or  “this may not be the direction we want to take”.

After meetings all day, I have to say each and every congressional representative we met from NJ was open and receptive to the things we were fighting for.

cookie We even had an unexpected meeting with a member of Congress during lunch.  He joined the rare disease caucus right on the spot and endorsed the Open Act.  Pretty amazing stuff.  (As an inside joke, all credit goes out to a cookie…. ask me about it the next time you see me!).

Overall, it was an honor to increases awareness of MLD as a rare disease and to represent all of you as a MLD mom on Capitol Hill.  I strongly recommend all of you to participate if you can next year!

~Kim

p.s. [from Dean] … Thanks, Kim.  I was thrilled to have you there, too! I look forward to a bell – and a cookie at our upcoming MLD Family Conference (July 15-16)!

(Check out Kim’s blog for her daughter Reese here). Emily Sevcik, a MLD mom from North Carolina was also there.

Rare Disease Day is the last day of February. Rare Disease Legislative Advocates, a program of EveryLife Foundation organizes the week, they offer modest travel stipends, and take care of all of the logistics.  Do plan to join us in 2017.  It’s important (and fun) work.